Sunday, December 4, 2016

Neurology update, Orthodontist and a New Developmental Pediatrician

Most recently we met with the kids' neurologist, Dr. Lavenstein.  This was an appointment I was a little nervous about because Reagan hasn't had her medication level increased in over a year and a half.  If we don't increase the meds I worry about breakthrough seizures and if we do increase the meds I worry about them making her "snowed" during the increase.  The appointment went well.  He said that Reagan is still in the mid-range of the medication dose for her weight.  So she will stay at that level and we will plan another EEG prior to our next appointment next May.

Cole also had a good appointment and Dr. Lavenstein was happy to hear he wasn't having as many head aches.  I was a little surprised when he said, "so what else do you want to talk about?"  And then said the words I wasn't ready for, "I don't think he needs to come back unless he's having issues."  Wait, what?!  DISCHARGE?!  Didn't see that coming !  One less appointment?  I'll take it!  Although I still have to go and take him for Reagan's appointments, but it's nice to have one less appointment for him.

Cole also had an appointment with the orthodontist.  He has a tooth that he lost a few months ago that has nowhere to come in so I wanted to see if we need to do anything proactively to prevent it from coming in as a second row tooth.  Luckily she said we should wait until he loses the symmetrical one on the other side and see how that comes in first.  If it doesn't push the canine out then we will probably have to extract a tooth to make room and to prevent the teeth from moving more than necessary.  Ultimately it will mean brackets on the bottom to widen the space and he will need a palate expander on the top as well.

In addition to all this fun, I also had an appointment with a Developmental Pediatrician at Capital Area Pediatrics.  I completed a lot of paperwork about Cole's history and met to discuss my concerns.  It was a great appointment and I really felt that she understood our situation.  We have another appointment next week for her to meet Cole and do some testing.

As promised, I like to include funny quotes from the kids and haven't had any lately.  I have two for this update!

So we were in church last week and were reciting a prayer that includes "cast into Hell Satan."  Cole leaned over and whispered, "Mom, what makes you get sent to hell?"  I told him that any time you turn away from God by sinning that you are listening to Satan. He paused and said, "hey mom, I'm a little worried about my friend A from school because I think he is listening to Satan.  We better tell my teacher before it's too late!" So cute that he is worried about him!

One more.  So I was putting Cole to bed tonight.  As I often do, I gave him a kiss and told him I love him to the Moon and back. He looked at me and said, "Hey mom, that's only 4 days away.  The sun is much further, don't you think you should love me to the sun and back?" Can't argue with that logic !



Thursday, November 3, 2016

Neurosurgery, Low Vision and a "Removable Visual Prosthetic"

Well it's that time of year!  It's not pumpkin spice and egg nog, but none the less part of the journey. Just a quick update after a few appointments.  After five days of head aches Cole is finally pain free.  We are watching him carefully and trying to increase his sleep and water intake. It's so hard to know when to be worried about a shunt malfunction, but we've been told if the pain doesn't go away that's probably a good sign we need to go to the ER.  So until then we continue to stock medicine and hope they don't come back.


We had a fun Halloween - one of those holidays that gets better as the kids get older. They were very excited about choosing a mean face pumpkin and going trick-or-treating. It is always tough with lots of kids running up and down steps in the dark. Cole had a few falls, but he always got up, picked up his candy and kept going. And of course he stopped at every door to ask about the dog and comment on decorations.  Such a sweet boy.  The both chose to be bats this year - one Batman and one Batgirl.  For those with a really good memory, you'll probably remember this costume (although much smaller) from when Reagan was three.  At least we can say she is consistent with her taste!  If you ask her why she loves it she will tell you it's not scratchy (like the witch costume) and it's comfortable and stretches.

We've had a busy week with appointments.  We met with the kids' neurosurgeon, Dr. Myseros, and as expected, he said everything looks good and he will see us back in a year.  He was happy to hear Reagan is still seizure free.  And he was especially happy to hear Cole's eye surgery went well.  He said he doesn't see a need for any follow up CT scans, but rather do them if we happen to have concern of a shunt scare.  There was one surprise I wasn't expecting.  Apparently some children with shunts have complications that result in the brain not growing correctly because an overactive shunt causes a vacuum effect which stunts the growth.  Luckily Cole's head circumference is following the growth chart correctly and given his age we are probably out of the woods for any concern with craniosynostosis.  I guess I'm happy I didn't know this was something we had to worry about...one less thing.

We also had an appointment with the low vision specialist, Dr. Mojollal.  And although I didn't have any specific expectations, the appointment was very informational.  Unfortunately Cole had a hard time with the eye exam.  He kept telling us he couldn't read the letters shown.  It's frustrating because you want to encourage him but it's sometimes hard to tell if he is just being difficult.  The end of the day, end of the week and he gets very tired.

I asked him about the contacts Dr. Hertle has suggested and he had a lot to share.  First, he was able to explain the benefit of contacts in a very clear way.  The most prominent benefit is for children who have congenital nystagmus.  When children are born with nystagmus the brain is used to the way the eyes work and the shaking is not unexpected.  When contacts are put on the eye, the eyelids immediately send biofeedback to the brain signaling that something is different and therefore developing a communication that was lost.  Second involves the refraction.  When light goes into the eye glass lens it refracts then refracts again before it gets to the eye. With contacts the light refracts only once since the contact is touching the eye ball.  The third benefit of contacts has to do with the nearsightedness.  Not everyone with nystagmus is nearsighted so it isn't a problem for everyone.  But in order to fix the nearsightedness in the eye glass text must get smaller.  And when it's smaller it's much harder for someone with nystagmus to see since everything is smeared all the time.  The contact lens fixes this problem.  Needless to say, I was very happy to hear about these benefits.

In addition to talking about contacts, we tried the monocular again.  Unfortunately Cole still struggles to align the lens on his eye to have it work.  So we've decided to table this for now.  He did mention a new technology that he would like us to try.  It is being marketed as a "removable visual prosthetic" called Nueyes.  They are glasses with a built in camera with up to 12x magnification.  But not just that.  The glasses also have OCR capability, or optical character recognition.  So if he was viewing a book it could read to him through an ear bud.  They are also fully voice enabled and have internet capabilities.  They also won an award at the Computer Electronics Show.  We have really been struggling with the CCTV at school because Cole can't seem to write without having his hand blocking the view of the paper.  We are hopeful he will continue to get better with more practice, but we are always looking at other options.  And although we are excited about this opportunity and look forward to trying it, it comes with a very hefty price.  The glasses are currently priced at over $6,000.  We will investigate the possibility of the Department of the Blind and Visually Impaired supporting this purchase, but not sure whether they will consider it.  We plan to at least go try them in the next few weeks when they arrive and see if he can benefit from them.

Next up?  Neurology next week...a little nervous about this one regarding the discussion of Reagan's medication levels.  We will wait and see what he says!




Wednesday, October 26, 2016

Celebration of a birthday on earth and in Heaven

Cole is finally six and couldn't be more excited.  He was lucky enough to celebrate his birthday for an entire week!  We had Pop and Nana over on his birthday, took him to Cheesecake Factory over the weekend (he loves cheesecake), had his party with his friends and cousins the next weekend and then celebrated with his Grandma and Grandpa after his party.

He decided he wanted a party at his Dojang (Tae Kwon Do School) and share his love for Tae Kwon Do with his friends and family.  Majest Martial Arts does a great job hosting parties and all the kids had so much fun.  They started with a demonstration for the kids to see how well trained black belts kick boards.  Then they took a class so they could all break a board themselves and learn some Tae Kwon Do moves.  They even asked mom and Cole's Uncle Pat to break boards and they did !

The kids also had free time to play on the moon bounce and take a ride in the Majest limousine.  And a party wouldn't be a party without pizza, fruit and a cake cutting with a Korean sword!  My sweet boy decided instead of asking friends to bring him gifts he would make donations to the Ronald McDonald House in Akron, OH.  We will be going back in December and plan to take the donated gift cards to deliver them personally.  We look forward to being able to help other families who will need to stay there.


As tradition continues, we chose to light a lantern in memory of our sweet Kendall Kaye.  Unfortunately the weather did not cooperate on her angelversary this year so we moved the celebration to the following weekend.  It's always a somewhat difficult evening, but it's also something the kids have started to look forward to. They don't ask as many tough questions anymore so that makes the evening a little more relaxing. The sting is not quite so difficult, but the loss is still an ache in your heart that never really heals. Reagan has started writing notes on the lantern now that she can write.  Cole did ask how the lantern actually gets into Heaven...and of course I had to break the news that it's not quite as easy as going up in the sky or I would have done it already :)  He is so curious and I love it.  The other day he asked where the heat comes from in the car.  When I told him it comes through the vents he said, "no, how does it actually get hot."  An explanation of coming through the vents was not sufficient. Luckily Johnny is very patient and does a much better job explaining things like that than I do.

Other than school and activities being busy, life was pretty uneventful until this week.  Cole is unfortunately suffering from three days of head aches. I'm trying to work through a good routine with the school to call when they think he needs medicine but not send him home just because he says it hurts.  It's a harder formula to develop than you'd think.  Unfortunately he vomited on his desk at school today and hasn't stopped telling me about it.  We are hopeful tomorrow will be free of pain for him.  The neurosurgeon does not think it's shunt related given the pain is not persistent, but we are, of course, monitoring him closely.  For the last three days the pain is on and off from about 8am until 2pm and then he seems fine after that.

We are headed into the tough Fall doctor schedule so there will be lots of updates coming.  Hopefully they will all be boring !!  Both kids will be seeing their neurosurgeon and neurologist.  Cole also has an appointment with the low vision specialist and Reagan has an appointment with the orthodontist. All in the next week and a half!  What was I thinking?!




Monday, October 3, 2016

Ophthalmology Follow Up and Update on Healing

We are just over a week after surgery and Cole is doing very well.  The blood has started to dissipate from his sclera (the white part) and the swelling has gone down almost completely.  He has done very well explaining his surgery to people he meets and was given an opportunity to share with his class on Monday morning.  We all continue to notice less shaking although we've also noticed his eyes seem to sometimes not align correctly. We are monitoring this and plan to talk to Dr. Hertle about it if it continues. This could mean that the muscles were not tightened correctly.

He had a follow up with his regular opthalmologist, Dr. Jeffries, on Monday, and she was very happy we had followed through with the surgery.  She said his eyes were healing as expected and saw no signs of infection.  She did a vision test and said he seemed slightly improved.  It was a somewhat disappointing appointment, however.  Although Dr. Hertle said we have a lot to look forward to with visual improvements up through the age of 15 years old, Dr. Jeffries said that over time the muscles will loosen and the shaking will increase again.  I've asked other nystagmus patients in the Nystagmus Facebook group about this and several said they have had this problem.  And so the roller coaster continues wanting to feel progress and hope and yet continually being reminded that the future is so unknown.  And so we continue down the road less traveled and pray that we are being led in the right direction.

Next on our journey is to consider contacts.  So I contacted Cole's optometrist, Robin Alexander at The Eye Center where we get his prescription filled to ask about contacts.  She has been AMAZING over the years helping us choose frames.  She said she wasn't familiar with having children as young as Cole getting contacts and although she can fill them, she had a lot of questions I couldn't answer.  We also will have no coverage for these since we will need to use the vision benefit for his frames.

I mentioned the challenge of having him fitted for contacts to the nurse when I made the follow up appointment with Dr. Hertle and she suggested scheduling an appointment with the optometrist at Akron Children's to have him measured for the contacts.  Given his eyes are still healing, he wouldn't be able to wear them yet anyway.  So we are scheduled to go back December 6th.  We don't want to tell the kids yet, but I plan to fly up with Cole.  Reagan is going to be very disappointed when she finds out Cole gets to fly on a plane.  Perhaps we will need to find a good excuse to take a trip somewhere!

Next up?  Cole is turning six!  Wow...